Tuesday, September 14, 2010

A Cloud for Every Silver Lining

It's been a busy day, and I have found myself feeling very scattered (as opposed to my usual sense of being a model of organizational prowess, ho ho, ha ha).

I actually had some web work to do, wrestling a client's recalcitrant e-newsletter into submission via my epic HTML skills, while simultaneously trying to feed and dress Katie & James. (Imagine trying to cut a tough steak using a Playdoh knife while being pecked at by vicious hummingbirds and you will have a feel for how this went.) Meanwhile, James had 2 therapy visits, and his service coordinator was also on the phone over and over as we try to hash out a date for his first team meeting, since his IFSP expires on Oct. 1. One of our issues at hand is that while James (who turns 3 in May) is eligible to attend a local center-based program come January, Katie could only go to it with him if a) we pay $500/month (OUCH!), b) we drive her in (it's half an hour away; James would be bussed) and pick her up, and c) she turns 4 by December, which she doesn't (not until June). So much for that.

Originally, when faced with discussions about James transitioning from Early Intervention into the school district, we felt that the best scenario was to have the two of them attend a universal program together - whether or not they were actually in the same classes - because neither would thrive if home alone. Of course, this is no longer an option. So now the question is, would James be better served by remaining home with Katie until the new school year starts next September when both of them can go off to wherever they go (individually or together, whatever), particularly if we can get all his therapies upped to three times a week, or should we send him to the center alone (My baby! Alone! On a bus! ACK!) and see if we can't find a local (the center is a good half hour ride away) playschool-type daycare for Katie a couple of times a week.

So it was turning into quite the not-enough-caffeine-in-the-universe day, and I was rising to the challenge by musing about creative ways to fit a nap into all of this somehow (Forts in Mommy's bed? Let's see how many stories we can read with this flashlight under the covers in your bed? Who can stay quiet the longest?) when I decided to bop over to Facebook for some... um... research... and noticed a link on my feed from a facility I had "liked" a while back and then promptly forgotten about. Coincidentally, it's a center-based preschool (unfortunately in southern NJ) . I went to their page to finish reading something and a slew of paid ads popped up to the right, as per Facebook usual, one of which was for some assisted living-type apartments for adults with autism.

And for a moment, I was 20 years older, and reading this with an eye toward having to place my boy there because he can't care for himself and someday I won't be here either. My stomach dropped, and I swear I could hear another ominous creak from the direction of my chest as my heart threatened to break just a tiny bit.

Is this what he has to look forward to? My sunny little guy, who spent today looking to Momma for claps, then running victory laps around the living room and dissolving into a heap of giggles on the rug each time he correctly sorted shapes for his Special Skills therapist? (Which was almost every time!) Who cracked his Speech Therapist up when she asked him to take something and instead of whining or rebelling, he simply placed his hand gently over hers, pushed it down away from him, and very methodically shook his head "no"... then grinned and took the offered item anyway, chuckling at himself? THAT guy?

Suddenly the enormity of the future with all its uncertainty came crashing down on me, and all I could see was loneliness and dependence and...


Yes, I know the positives. I used to work in these places. Hell, I've RUN these places. And they are admittedly a far better alternative than living WITHOUT the supports they offer, if you need them. And he may not ever need them; he is progressing marvelously and who knows what the future may hold for my beautiful, shining boy? But they aren't home, and those responsible for helping him there might care for him too, but they will never love him.

Good gods, but autism sucks sometimes. And motherhood? How can anyone be prepared for this? There are times when the only sensible response seems to be wailing and finding a corner to hide in.

But then there's this:

... which we file under "Raising smurfs makes it all worth it" :)

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